Newbie story looking for some advice

[jjl]

Hello all. I am new to this forum and I wanted to tell you our story. But, first, thank you to whoever put the forum together. I think it is helping a whole lot of families that have nowhere else to turn. We have two sons with autism, one 9 and one 10.5. Our older 10.5 yr old son is more affected than our 9 yr old. Our older son is minimally verbal, I would say moderate to severe asd. But the last few years have been very very difficult. In late 2008 he developed frequent urination, spitting, throat clearing, agitation that got worse into Winter 09. We got him scoped since the spitting was so so bad. However, we were very surprised with the scoping results because what we thought might be just ocd spitting turned out to be a large area of swelling in his arytenoids (the airway valves). The doctor in Long Island has scoped well over 1000 kids with asd and had never seen swelling in this area. He consulted with a specialist and they thought it was allergy-related, but we never tracked it down. So, in Mar 09, he got a month of prednisone, flonase steroid throat spray, and prevacid in case it was acid reflux and our son got a little better. He was spitting so much he was wearing a bib at the time. Funny thing is that even if it was ocd which I read parents believe spitting is, he definitely had swelling in that area. Anyhow, he got worse after stopping prednisone (although he threw up on it 5 times while on it). He got another round of prednisone in July 09 which helped minimally and then he got worse. We went on to try several other types of treatments for allergies acid reflux, and you name it but nothing reduced his symptoms. He missed school almost all of 2009 and just after starting this Sept 2010 he got worse again and they moved him to a low functioning school due to the dozens of potty trips and irritation. Then he got really bad a few weeks ago and we had to pull him out of school. Over the last few yrs, we have looked at numerous illnesses that COULD cause many of these symptoms and there were a couple including PANDAS that could account for all of them. The other illnesses never panned out and when we looked at PANDAS a few yrs ago, we were told he did not have it because his throat culture and ASO/DNASE were negative on 2 occasions (three if you count the most recent testing this month). I was talking to a friend that brought PANDAS back up and I looked into it again. But of course now there are good web sites and forums (like this one) and the key is that I found out half the tests can indeed show as negative and a child can still have PANDAS. Also, when I read all the cases it was amazing to see the same set of symptoms that we have seen off and on for the last 2 to 3 yrs. So, we made an appt with Dr Latimer (we live in Maryland), but it is not until late Dec. Since our son has it so rough now, I tried to get our pediatrician to prescribe abx but she did not really want to. But, luckily, our DAN doc came thru and prescribed a 3 month supply of Zithromax. Our son has been on it about a week and we have not noticed any change in symptoms. We think he may be getting high yeast now due to the bacteria dieoff from the Zith, so we started Ampho-B today. I am not sure we are on the right Zith dose though. I keep reading about high dose abx, but I have not seen what high dose means for Zith. I did see a ref to 10 mg/kg for Zith. That would be 320 mg for our son but our DAN doc went with 200 mg. I hope that is enough. I hear it may take a few weeks or even months to see improvement. And of course, I am reading that he won’t improve unless the issue is strep which I am not sure he has. If it is a tic illness or a virus, that is a different ballgame. I guess Dr Latimore will help guide us with all this. I am also guessing that the reason he only did a little better on prednisone is because we never tried to kill any strep because it was never considered. So, whatever is causing the issues are still present and when I listened to Dr Latimore’s audio session, she said 1) Get rid of the source of infection in the child and family and 2) treat immune issues. Hopefully, the Zith helps with 1). We need to get my wife, younger son, and I tested also though. Even though the appt with Dr Latimore is not until late Dec, we should be able to tell her how he did on 2 months of Zith. If he did not do well by then, she may want to go straight to IVIG, but I am sure she will run tests first. Our younger 9 yr old son is moderate asd, moderately verbal with Q&A but not fully conversational. He reads and writes, but he is still in an asd class because of his poster child ADHD. He also has PANDAS symptoms, but they are different. He actually has some daily choreiform movements, ocd, hypotonia, pupils sometimes get big. So, we want to treat him also and we made an appt for him in Jan. Bottom line is that we feel strongly that our older son’s last few yrs of big problems are PANDAS, which explains so so much. I am so happy to see so many kids make progress treating PANDAS as that gives a lot of hope.

 

I hope you don’t mind the novel but we have been in a 2 yr spiral and getting worse. Is there anything we should do that I did not mention. Does anyone have any thoughts about the swollen arytenoids? I should also mention that our son has always had a light rash on his right bicep. Hew has never shown any signs of strep other than several stool tests that showed a 4+ out of 4 for gamma strep but the docs always discounted that. Not sure if that means anything. Any feedback is appreciated. John L

[T_Mom]

Hi John, I certainly wish you well as you explore the Ps possibilities. Dr L. may be very interested in the results of the scope that was done, which indicated swelling in his airway valves. Have you had the Cunningham research blood draw done? It may provide additional clues and you could have those results to take with you to see Dr L. You may want to get those done--

[marylandmom]

Hi John, we live in Maryland as well. Silver Spring.

We have seen Dr Latimer twice, she is great. They had us wait until our first appointment with her to have any bloodwork ( besides ASO her pediatrician had ordered) done. Dr L did order her Cunningham.

We had to wait a while to get in to see her but she was WELL worth the wait.

I would be happy to chat with you more if you like about her. Just send me a PM.

 

Marylandmom

[jjl]

Hi John, I certainly wish you well as you explore the Ps possibilities. Dr L. may be very interested in the results of the scope that was done, which indicated swelling in his airway valves. Have you had the Cunningham research blood draw done? It may provide additional clues and you could have those results to take with you to see Dr L. You may want to get those done--

 

We will show the scoping results to Dr L. It is really amazing since all we saw was a bunch of spitting (which many PANDAS parents report) and what the doc found was real swelling in the arytenoids. We thought the spitting was ocd...boy were we wrong! Luckily, we called his GI doc and he recommended a scoping. Maybe it is related to his suspected PANDAS somehow or maybe it was some type of allergic reaction. Of course, two yrs later and his spitting has come back. The doc has him on oral steroid spray and this time he is also on Zithromax in case it is strep. If the spitting does not get better, we have a big problem to address beyond PANDAS.

 

As far as testing, we have only done the ASO/DNASE/Throat culture, all of which were negative as they were the previous couple yrs, which is why we never pursued PANDAS before. We'll probably wait until we see Dr. L for testing since noone else we know would prescribe that test.

 

Thank you for your reply, John L

[peglem]

I'd try increasing the zith to 500mg/day for a week or so, then 500mg every other day. So glad you are getting in to see Dr. L she is wonderful.

[KaraM]

The Zith dose sounds low to me, too. Can you at least get your doc to prescribe a higher treatment dose for a short period - maybe a week, then go back to a lower prophylactic dose.

 

Our pediatrician started my dd8, 62 lbs started at 350mg Zith for 5 days, then halved that until for 2 months until we could see specialist. Dr. B. then increased it back to 350mg for a month, then back down to 200-250 where we are now (6 months later).

 

Also, you may want to consider adding some ibuprofin for a short period (with doctors permission of course).

 

Kara

[thereishope]

Welcome. Has anyone thought that the spitting was a combination of things? That it may have started from the swelling, but then morphed into more..whether it be a combo of the swelling and OCD or a tic? When was the last scope? I am assuming the swelling is still there?

 

As for that rash, has anyone mentioned if it could be strep? I don't think strep on the skin would always raise titers, but it can affect PANDAS symptoms. Have your tried any creams on that rash?

 

What other meds, supplements is your child on? I ask since swelling may be a rare side effect of some things. For example, my optic nerves swell to the point that I will get symptoms similar to a brain tumor with higher dose of Vitamin A. So, I suggest also researching all known side effects for all supplements your child is being given.

Edited October 28, 2010 by Vickie

[PacificMama]

Hello,

 

Since these problems began while living on Long Island, which is an incredibly lyme endemic area, I'm wondering if there was any evaluation for lyme done? All of what you have described is symptomatic of lyme (there is a separate lyme forum here on the Latitudes web site precisely because so many of the PANDAS kids tunred out to have lyme and/or related tick born infection).

 

As you might know, the testing is not always accurate, and a person really needs to be seen by a knowledgeable lyme specialist to make the diagnosis.

 

Mary

[EAMom]

I'd try increasing the zith to 500mg/day for a week or so, then 500mg every other day. So glad you are getting in to see Dr. L she is wonderful.

 

Or even stay at 500mg/day. Our 64 pound dd normally gets 250mg/day...but we are now doing 500mg/day for a month trial to see if that helps with some of her remaining symptoms. She does seem better (better mood, more mature, handwriting looking better) on the higher dose.

[EAMom]

 

 

Also, you may want to consider adding some ibuprofin for a short period (with doctors permission of course).

 

 

 

I was thinking the same thing. You could try full-strength (3-4x daily) short term (a few days, give with food). Longer term, consider giving it less frequently (to be safe) 1-2 x daily.

[Kayanne]

It seems you are on the right track. I would also show Dr. L the results of the stool tests that show positive for strep. I think Dr. L believes that it can be in the gut too.

[jjl]

I'd try increasing the zith to 500mg/day for a week or so, then 500mg every other day. So glad you are getting in to see Dr. L she is wonderful.

 

Thank you to everyone who said to try higher dose Zithromax. I thought I read somewhere that an avg dose is 10 mg/kg so our son should be on at least 320 mg 9not the 200mg he is on now), but we could always try 500mg for a short while to see how it goes.

 

One extra question I have. Normally when we treat bacteria we also use antifungals to keep yeast at bay. After one week on Zith, we are starting to see yeast symptoms. Do you all normally treat with antifungals while on abx?

 

John L

[jjl]

Hello,

 

Since these problems began while living on Long Island, which is an incredibly lyme endemic area, I'm wondering if there was any evaluation for lyme done? All of what you have described is symptomatic of lyme (there is a separate lyme forum here on the Latitudes web site precisely because so many of the PANDAS kids tunred out to have lyme and/or related tick born infection).

 

As you might know, the testing is not always accurate, and a person really needs to be seen by a knowledgeable lyme specialist to make the diagnosis.

 

Mary

 

Mary, I should have been more clear. We do not live in Long Island, that is where our GI specialist is. We live in Southern Maryland. Having said that, we did have a lyme panel done a year ago and it was negative. Are you aware of a listing of lyme specialists anywhere? I understand it is very tricky to treat. John L

[jjl]

Welcome. Has anyone thought that the spitting was a combination of things? That it may have started from the swelling, but then morphed into more..whether it be a combo of the swelling and OCD or a tic? When was the last scope? I am assuming the swelling is still there?

 

As for that rash, has anyone mentioned if it could be strep? I don't think strep on the skin would always raise titers, but it can affect PANDAS symptoms. Have your tried any creams on that rash?

 

What other meds, supplements is your child on? I ask since swelling may be a rare side effect of some things. For example, my optic nerves swell to the point that I will get symptoms similar to a brain tumor with higher dose of Vitamin A. So, I suggest also researching all known side effects for all supplements your child is being given.

 

Vicki,

 

Yes, more than one doctor weighed in on the spitting, especially after the scoping (Mar 09) showed the arytenoid swelling. The swelling went down after a month of prednisone and topical steroid. The consensus seemed to point to an allergic reaction, but that was never pinned down and now it is back 2 yrs later. So, unless it is an outdoor allergy that skipped one season (spitting started Fall 08), I don't see it being an allergy. My personal theory (not a doc) since nothing else has panned out, is that it could be spitting (and maybe swelling again) related to his recent exacerbation. In 08/09, we looked at and treated for GERD, allergies, inflammation, and a few other things. Only steroids help get rid of the spitting whech says the swelling went down. So, I am wondering if a PANDAS type exacerbation could trigger an immune response in his throat and cause the spitting symptoms. It is possible that the swelling was not related to the spitting, but it is also possible that the swelling and spitting are related. It makes me wonder if all the spitting reported with PANDAS is simply ocd or if there is more to it.

 

As far as the bicep rash, it is chicken skin looking rash and nothing has helped it. It is not red or swollen, just a light bumpy rash. I will make sure to point it out to Dr L. As far as thew supps and foods for that matter, we scrubbed every ingredient over several months and nothing came up. If it were food though, I would think he would have had constant spitting over the last two years and it was gone from Summer 2009 until just now. That is what makes me think of PANDAS. The spitting in the Fall of 08 was tied to an exacerbation and the spitting just restarted with an exacerbation now.

 

The question that I am really thinking hard about is can PANDAS cause an immune response in one particular are of the body like the throat which can then cause symptoms like spitting. This may seem rare, but I doubt there are very many PANDAS folsk that just happen to have a scoping during an exacerbation to see what may be swollen. The other interesting point is that our son had been on Colazal, anti-inflammatory, for years from his first scoping in 03 (LNH) and the 09 scoping showed much improvement in all areas, but the doctor was very surprised by the arytenoid swelling. It's a real puzzle. John L

John L

[EAMom]

don't forget to take videos (of movements/behaviors/tics) and pics (rashes) in case things change (or go away) by the time your appt. roles around.